An expert panel of Australian and New Zealand clinicians have reached consensus on a core set of management statements regarding vulval lichen sclerosis (VLS).
The 22 experts, mostly dermatologists, with some gynaecologists and a paediatrician, reached consensus on 51 statements across diagnosis, severity, initial and long-term management, follow-up, and complications of VLS.
Key practice points, published in the Australasian Journal of Dermatology, included:
- It is recommended that a biopsy or photographic records be taken at first presentation and/or prior to treatment in all patients.
- Potent to ultra-potent topical corticosteroids is the mainstay of initial treatment for VLS.
- Long-term treatment should be adjusted according to the severity of disease.
- Long-term individualised regimens with topical corticosteroids (TCS) are recommended to achieve optimal outcomes.
- Continue regular TCS treatment even when asymptomatic.
- Follow-up of VLS should be undertaken for an indefinite period.
Professor Gayle Fischer, from the University of Sydney and head of dermatology at the Royal North Shore Hospital, told the limbic that consensus was achieved fairly readily.
“Consensus always takes time but considering what a big group we had I was pleasantly surprised how quickly we did get to consensus on this. I think this reflects that fact that Australian dermatologists are all very much on the same page now about treating this condition.”
She noted however that the local recommendations were not the same as the British guidelines.
“The British Association of Dermatology don’t recommend a biopsy which we don’t agree with because a biopsy is such a minor procedure and confirms the diagnosis before you tell a patient they are now on life long treatment.”
The British guidelines also recommend initial treatment with clobetasol propionate for three months and ongoing treatment only for active disease.
“From all our experience we believe that treating proactively is the best management for these people. It results in the best outcomes – it appears to almost completely prevent cancer and it also appears to almost completely prevent progression and scarring which are the two main issues with this condition.”
“Most skin conditions don’t cause cancer or scarring – it’s unique – and scarring of the genital area is particularly awful for patients.”
She said a very convincing paper published in JAMA Dermatology in 2015 showed how proactive tailored treatment benefits patients.
“And it’s such a simple, safe and inexpensive way to make a huge impact on people’s long term outcomes.”
“With any chronic inflammatory skin disease, we are trying to keep the patients as normal as possible. And the best way to do that is to use very regular treatment. As with atopic dermatitis or psoriasis, you would want your patients to treat themselves every day. We are just following the basic principles of being a dermatologist in managing this condition.”
Professor Fischer said she sees her patients annually or every two years if they are very stable.
“And it’s not only to check for cancer or to check for too little or too much treatment. It’s about ensuring ongoing compliance because I think that if I was on a long term treatment, I would want to see my doctor at least once a year.”
“It’s such a potentially serious, life ruining condition that is so easily controlled. It’s an absolute no brainer.”
She said most patients who were seen regularly were very good compliers.
“The ones who get lost to follow-up, they have almost always reverted to just putting on treatment when it itches. And they have often done badly, they have relapsed and developed scarring.”
She said concern about side effects with steroids played a part.
“Corticosteroid phobia has been around for maybe 30 years now and it’s never changed. You have to do a lot of work as a clinician to defuse that fear.”
However she said some alternatives might have more risk than steroids. For example, there have been reports of vulval cancer in VLS patients treated with topical calcineurin inhibitors like pimecrolimus.
She said side effects from long term topical corticosteroids were usually limited to redness and skin irritability.
“You cut down the potency of the steroid and it all goes away. So you can be using steroids for years and years and not see a single side effect from it and that is because you are actively suppressing an inflammatory condition.”